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Join ASTOR Registry Today

The Alport syndrome Treatments and Outcomes Registry (ASTOR) was founded at the University of Minnesota in 2007 and is now the largest Alport syndrome registry in the United States, with connections to registries in China, France and Germany. Alport syndrome Foundation supports ASTOR, and has built an alliance based on our shared goal of infrastructure for research aimed at safe new treatments for the disease.

ASTOR’s primary purpose is to enroll families and patients with a history of Alport syndrome in a central registry.  The information gathered is used as a basis for studies designed to test potential treatments for Alport syndrome. Registries are particularly important for rare diseases like Alport syndrome because no one medical center will have access to enough people with the disease to carry out valid research studies.

Once enrolled in ASTOR, patients are encouraged to submit their medical data to the registry and to update their profile, as needed. ASTOR is currently accepting audiograms (hearing test results), genetic testing results (such as KIDNEYCODE), and lab results including your eGFR and creatinine levels. This informatation is vital to ongoing Alport syndrome research. Hearing loss data is especially vital, as this is a vastly understudied area, but that can change with your help; be sure to submit a collection of audiograms over time to potentially inform new understanding of Alport-related hearing decline. A simple call to your clinic, or accessing your clinic’s online portal, can provide digital copies of results, often in .PDF format, which can then be sent digitally and securely to ASTOR via email. If you are unable to obtain .PDF or .jpeg files of your medical data, simply take a photo with your camera phone for digital sharing.

ASTORIf patients enroll before the age of 18, which is important because research and clinical trials enroll patients as young as 12, patients must then RE-REGISTER after turning 18.

Registering with ASTOR is:

  • Free
  • Secure
  • Confidential (information does not get connected to medical records or insurance)
  • Critical for Research
  • Offers digital enrollment online (paperless process)

Questions: Contact ASTOR Coordinator, Sarah Lemmage, at (612) 626-7632

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